Photo Courtesy Dina Marie Photography

Tahji and Shaiann are typical twins. Their mom swore they would grow out of getting along so well as they got older, but they are still best buddies at 9 years old. They both love to write—though Shaiann prefers the creative story angle while Tahji has a flair for animation: Lighting Jackal and Squirrel Boy are some characters his imagination has fashioned.

Another common tie Shaiann and Tahji share is not so fun: they both have sickle cell anemia, an inherited disease that causes a person’s red blood cells to function abnormally and give rise to recurrent painful episodes called “sickle cell pain crises.” Shaiann and Tahji both were born with the condition, and the twins have even gone through episodes—and hospitalizations—together, oftentimes residing in side-by-side hospital beds.

Shaiann and Tahji undergo treatment at The Sickle Cell Center, part of the Jonathan Jaques Children’s Cancer Center at Miller Children’s Hospital. They both are regularly seen by a multidisciplinary team composed of pediatric specialists, including a hematologist, neurologist, dentist, clinical nurse specialist, nutritionist, psychologist, social worker and physical therapist/rehabilitation specialist. They even go to a special sickle cell camp every year.

Though Shaiann is doing so well that her parents often forget she has sickle cell disease, Tahji does still go through painful crises. His condition has improved lately, though, thanks to treatment with Hydroxyurea—a potent drug used to treat some forms of cancer—that has shown promise in reducing the crises’ frequency, duration and severity. Though he has to miss more school than he would like, Tahji still performs at the top of his class and finds plenty of time to concoct sticky situations that Squirrel Boy has to get out of. And of course, he’s got his No. 1 superhero supporter by his side—Shaiann, who is always willing to give her brother a big hug when he needs it. After all, he does the same for her.

Because Shaiann and Tahji are hugologists to each other—as well as sicklers—they are our heroes.